Day 90: As Long as it Takes to Get the Job Done

Yesterday was truly one of the longest and most difficult days we have experienced thus far. Sophie’s surgery was originally scheduled for 8:30 am, with an arrival time of 7 am to MSK. When we got there in the morning, we were informed that an emergency case had been added before us, and that we would be starting ‘shortly’. After an anxiety-filled night and early morning, this new news did nothing to calm our nerves; but emergency is emergency and so we sat and waited for our own surgery to begin.

And so the waiting game began… and continued for 7 hours until 2 pm. Unfortunately, the surgery before ours took much longer than anticipated, and we were unable to receive frequent updates as to when we would begin. This caused enormous apprehension for us since Sophie was unable to eat since the night before surgery. However, true to form, she was an absolute trooper and took everything in stride (with a lot of help from Peppa Pig as well). She barely complained the entire time we waited, as we moved from the children’s floor to the surgical floor, to pre-op and into the operating room. Finally at 2:15 pm, she was given anesthesia and taken to the operating room to begin our long-awaited surgery.

When prepping for the surgery, we had asked the surgeon how long this kind of procedure often takes. We were repeatedly told the same answer: “As long as it takes to get the job done.”

After persistent questioning, we were ultimately told to expect surgery to take about 3 or so hours; in the end, it took over 7. And we would be remiss not to take a minute to acknowledge the absolutely incredible, and amazingly kind and gentle doctors at Sloan. There is no doubt in our minds that we are at the right place with the right team.

First, Dr. Wexler, our phenomenal oncologist, came to us about 2.5 hours into the surgery to let us know that he had gowned up and had been sitting and holding Sophie’s hand in the operating room up until that point. This is the same man who had previously offered to be a blood donor for Sophie should we ever need it (how many doctors would ever do this?!), and now took over 2 hours out of his busy day of seeing patients to sit with our beautiful girl and hold her hand when we could not. It is so rare to see such dedication, true passion, and love for patients that Dr. Wexler has shown for Sophie in her journey so far.

Moving onto the other unbelievable and true heroes of the day; Dr. LaQuaglia and his team of pediatric surgeons. When we had previously discussed the surgery last week, we were hoping for a fairly uncomplicated tumor resection, where Dr. LaQuaglia would attempt to remove what was left of the tumor from Sophie’s lung, along with part of the lung itself. The overall goal of the surgery was to extract the tumor and achieve “negative margins”. What this means is that during surgery itself, the surgeon will send tissue from around the tumor to the pathology lab, to have them confirm that there are no microscopic traces of cancer left behind.

The first major update Dr. La Quaglia provided unfortunately informed us that he was having some difficulty achieving these negative margins, and the team was still finding microscopic traces of cancer in one area. After an extremely long and stressful day already, we were very disheartened by this news, but trusted in our surgeon (as he had originally told us) to “do whatever he could, for as long as it takes” to have a successful surgery.

The next 3 hours were absolutely the most terrifying and daunting moments of our life. When faced with a significantly more difficult and delicate operation than he had anticipated, Dr. La Quaglia was humble and courageous enough to ask another top MSK thoracic surgeon (non-pediatric) to scrub in to assist in ensuring the best possible outcome for the case. At almost 10 pm, Dr. La Quaglia returned to see us, and informed us that although he had had to perform an additional surgical procedure that was unplanned and pretty uncommon, he believed he had finally been able to achieve the negative margins for which he worked so hard. This result will ultimately need to be confirmed by a formal pathology report sometime early next week, but so far the surgery team believes they got everything.

Everything.

We truly believe that both Dr. Wexler and Dr. LaQuaglia were special messengers sent to us from God to take care of our brave Sophie.

Throughout the entire surgery, both surgeon and oncologist kept in constant contact with each other about Sophie’s care, to ensure that no matter what, a successful surgery was achieved. They discussed each and every detail of the surgery as it unfolded, to ensure that Sophie’s post-surgery treatment would be minimized. We will still need more rounds of chemo (as pre-planned), but our plans would have had to change had negative margins not been achieved.

As for our little Sophie: She had a moderate night and is continuing to rest comfortably while receiving a number of helpful pain medications. She has been awake for a bit today, but is still pretty wiped from yesterday’s events. We plan on getting her moving as quickly as we are able to, but anticipate staying in the hospital for a little while. She is one tough kid.

We again want to thank everyone from the bottom of our hearts for caring so much about Sophie and our family during this extremely difficult time, and ask again that you continue to pray for her over the coming days as she continues to regain her strength.

Thinking of you all. Sending so much love and support. Sophie is an unreal child with such courage and bravery. Thank you for sharing your story and allowing strangers in to such a personal experience. I wish you all only happiness, health, Simcha and love for each other always. May Hashim bless you all.

David and Jenny, We were so thrilled to hear the good news last night and hope and pray that darling Sophie marches on ahead on the road to full recovery. She is an amazing child, and she is so lucky to have you guys as parents, and such wonderful and supportive families and friends all around. We love you all.
Sandy and Gary

David and Jenny,
This brought tears of joy to hear that her surgery was a success. We have been thinking and praying for her. AMAZING what these doctors are capable of. Wow. And even more so your little warrior, Sophie. Rock on Sophie! Job well done all around. Can’t wait for continuing good news.

Thank you so much for sharing your challenging journey and letting so many people into your hearts. I am an early childhood teacher and my students are the same age as your beautiful Sophie. Every day during our tefila we ask Hashem to watch over Shalva Gavriela and they feel very strongly about their prayers. Not only does her story help them connect to god, it also inspires them to spread love in the world. May Hashem continue to watch over you, and may Sophie feel all of the love that everyone is sending her way.

Refuah shleimah dear sweet Sophie. Please know that you’ve touched hearts all over and we’re davening for you (in Miami Beach). May your recovery from this surgery be swift and may all be successful. Hoping you and your devoted parents return quickly to your home life.